SLE

[amy209]

My 11 year old son was diagnosed with SLE in November 2017. Currently he is taking Hydroxychoroquin, calcium D3, and asprin. He will be coming off Prednisolone next week. He will be introduced to Methotrexate. I have been told by few people that I should try herbal stuff like Moringa powder. Any feedback?

[Bronagh2015]

Hi Amy209, I'm really sorry your son has Lupus and at such a young age, it is I'm sure a difficult and worrying time for you all. My first advice to you would be to get in touch with Lupus UK and get their information pack for the newly diagnosed. Secondly I would strongly stress to be very careful with herbal remedies, there is no cure for lupus and some herbs can interact badly with medications. Please talk with your son's consultant at the next visit and voice any fears or concerns then and ask for their thoughts on herbal remedies. It's still very early days for your son and when he is on the correct medication for him things will improve for you all.

[amy209 in reply to Bronagh2015]

Thanks x

[whisperit]

Hello amy209,

Despite the claims by people keen to sell you herbal or nutritional supplements, there are no miracle cures. If there were, this forum would be empty.

Of course, it's a good idea to check your diet and make sure you are eating well. A few supplements - like vitamin D - might be worth considering. But do tread carefully.

Hope things settle down for you and your son very soon. x

[HazelW]

I have been on Methotrexate for some time now & I swear by it - it really does seem to control my symptoms , but I was warned by my GP to avoid herbal remedies because of possible reactions with the Metho. Lupus UK are an amazing group of people always ready to help with advice . Highly recommend that you get in touch with them. Good luck to you & your son.

[lupie46]

Sorry your son had Lupus. Don't be too downhearted. I'm 54 and was diagnosed 10 years ago, but have had Lupus symptoms all my life. Self care such as rest and a healthy diet alongside traditional medicine will help keep him well. Supplements and alternative remedies personally caused me issues. Speak to your son's specialist with concerns or ideas. Much luck and we're all here for support.

[Paul_Howard Partner LUPUS UK]

Hi amy209 ,

Some people may find that herbal remedies and supplements help them with the management of their symptoms, but it is very important to remember that everyone with lupus is different and what may be helpful for one person, may not help another, or could be potentially harmful. I would urge you to discuss any complementary therapies with your son's consultant before trying them so that they can warn you of potential adverse reactions and interactions with other treatments.

As others have said, there are no miracle cures for lupus but there is a lot of misleading 'information' online suggesting that certain therapies can help with the symptoms without any side-effects - it is always wise to be cautious of any such claims as most herbal therapies will have some form of potential side-effect or interaction and in a lot of cases you will unfortunately just be wasting your money.

If you need any more information about lupus and LUPUS UK, we have a free pack which you can request from our website at lupusuk.org.uk/request-info...

[johare]

I totally agree with what has been said. I was a school nurse before retiring and I would be cautious which using extra remedies as they can interact with medications. Any medication can take a while to settle and for you to see progress.

Although you will want your sons medical history to be private, it would be a good idea to discuss with your son who at the school he would like to inform. As due to the fatigue etc it would be a good for a member of staff to be aware of his condition and medication. Community school nurses are still around although rare if you need them and can help you with things like medication and support.

I hope your son sees an improvement soon.

[MEDIT3]

Hi I have Lupus and used to be on Steriods and planquenil.Then I started Methotrexate and very slowly I lowered my Steriods meds whilst I upped the dose of Methotrexate.This new drug took quite a number of months to bring down my inflammatory levels. But after years of being on Methotrexate I called it my wonder medication as it got me off the Steriods which although a very good medication long term can damage yr bone density.etc.Years later I can tell you I am now on a very low dose of Methotrexate and hopefully will eventually come off it .....I do still take Planquenil but it hasn’t upset me and my lupus is relatively stabilised.I haven’t any knowledge of herbal medication but I would be very careful as I do know some herbal things can interact with the powerful Lupus meds so do please get some advice? Sorry I cannot be more helpful and really wish you all the best with your son . .....I also am a member of Lupus UK .You could always join up or ring them for advice . Take care